Intimacy and Mental Wellbeing in People Living with Haemophilia
Research type
Research Study
Full title
Intimacy and Mental Wellbeing in People Living with Haemophilia: A Focus Group Study
IRAS ID
370958
Contact name
Stacey McGeown
Contact email
Sponsor organisation
EquiPath Analytics Limited
Duration of Study in the UK
0 years, 4 months, 30 days
Research summary
This study, funded by Pfizer and conducted by EquiPath Analytics Limited, explores how intimacy challenges affect mental health in people living with haemophilia (PLwH). While medical advances have improved physical outcomes, psychosocial aspects—particularly intimacy, relationships, and emotional wellbeing—remain under-addressed in routine care. Issues such as fear of bleeding, pain, body image concerns, and difficulties with communication or disclosure to partners can significantly impact quality of life, yet are rarely explored in depth.
The primary objective is to understand how adults with haemophilia experience intimacy and how this relates to their mental wellbeing. Secondary aims include identifying common challenges, coping strategies, and generating insights to support more holistic, patient-centred care.
The study uses a qualitative design involving 3–4 virtual focus groups with approximately 15–21 adult participants diagnosed with haemophilia A or B. Each group will include 5–7 participants and last around 90 minutes. A semi-structured discussion guide will explore themes such as definitions of intimacy, lived experiences, emotional impacts, communication with partners and healthcare professionals, and support needs.
Data will be collected via audio-recorded online sessions, transcribed, anonymised, and analysed using rapid thematic analysis. Ethical considerations include informed consent, confidentiality (with limits due to the group setting), and safeguarding protocols for managing participant distress. Data will be securely stored in compliance with UK GDPR.
Participants will receive a £50 voucher as compensation. The study is expected to run over six months, including recruitment, data collection, analysis, and reporting.
Findings will be shared in anonymised form with Pfizer and may be disseminated through reports, conferences, or academic publications. Ultimately, the research aims to inform more sensitive and comprehensive haemophilia care by highlighting the often-overlooked intersection between intimacy and mental health.
REC name
North of Scotland Research Ethics Committee 1
REC reference
26/NS/0050
Date of REC Opinion
1 Jun 2026
REC opinion
Favourable Opinion